2013 Christmas Letter

Glory to God in the highest heaven, and on earth peace to those on whom his favor rests. – Luke 2:14

Merry Christmas to you! We pray that you have been blessed as we have this year.

2013 was a pretty laid back year for us. Our biggest venture of the year was a family wedding in June, but other than that we mostly stuck to home and relaxed. It was our first full year in our new home in Elko New Market and we have really grown to love it. The neighborhood is great with plenty of space for Elisha to ride his bike and a nice loop for walks and trips to the park. We had a membership to the Minnesota Zoo this year so we made quite a few visits there as well. The visits got quite a bit more spaced out as the year went along, but one of our last trips was quite memorable as the kids got to feed a giraffe. Ryan has played guitar in church about once a month and now sits on the board at church as secretary. Steph transitioned to a training position within Best Buy. It is quite a bit more in line with what she would ultimately like to do. She likes it a lot and is having fun writing and presenting trainings.

Elisha continues to amaze us with everything he does. He is now in first grade at Good Shepherd and is doing quite well. He has really gotten into reading. It is recommended that he read twenty minutes a day, but being a little competitor he decided he would try to read at least forty a day and so far has almost always stuck to it. We started half and half between him reading to himself and us reading to him, but he has taken off and is already even reading some starting chapter books. He played T-Ball for the first time this summer, but spent almost all his free time at home - when it was nice out - playing football or baseball in the backyard with Dad or Mom. He spent his days during the summer doing a day camp at the local YMCA. He enjoyed going on 2-3 field trips a week and swimming at least once a week. He also got to go to his first Timberwolves game (thanks to a reading program) and his first Vikings game (thanks to the Vikings not doing so well this year and tickets being dirt cheap).

Isabella believes she is the mommy of the house. She regularly orders her little brother around to take naps, go to church, or go shopping with her. She has gotten more into princesses this year and even got to go on her first movie date with Mom to see Frozen. She immediately wanted to watch it again and loves to talk about all the characters. The first thing she does when she gets home every day is put on one of her princess dresses. She's even convinced she will be marrying Prince George. When she's not checking her hair in the mirror in her room, she is probably dancing around the house singing some amazing made-up songs.

Zechariah is definitely the baby of the family, but he does do a decent job of sticking up for himself when being picked on, mostly by #2. Zeke hasn't clung on to too many toys or characters yet, but does love it whenever he sees "M-Elmo". We have also nicknamed him our Baby Hulk and even dressed him up as such for Halloween. As noted elsewhere in this blog (with another post hopefully soon to come), Zeke had two surgeries this year to continue to remove his nevus. The first took out a little chunk and inserted two expanders under his scalp. The second removed a giant portion of what was remaining and removed the expanders. We are constantly amazed at the resilient bodies God gave us and the physicians he has placed in our lives to take care of Zeke.

Feel free to bookmark or follow this page for updates throughout the year. We'll see how good we'll be at keeping this up to date.

God's Greatest Blessings on 2014!

Love Ryan, Steph, Elisha, Isabella, and Zechariah

Fill 'er Up

July 3rd came quickly. Here are some pictures from that morning. More story below.

Pictures from 7/3/2013:

We both went along to the appointment to make sure Zeke stayed as calm as possible. 

First, our doctor put a numbing cream over the stitches and the ports (a new term we learned that day for where the additional fluid would be injected). We then walked a couple laps around the building to give some time for the cream to kick in (we also gave him some of his extra strength tylenol). After about half an hour, we went back into the office to get started.

Daddy held Zeke during the procedures to help make sure his head stayed as still as possible. First up was removing the stitches. Zeke did very well during this part. Everything came out cleanly and the scars looked very good. Next was adding more fluid into the balloons. Zeke got a little upset during this part, but it was probably pretty scary with all of what was happening, especially with a second part to the day.

It's a little tough to see in all these pictures, but the ports are just in front of each of the two bags. The doctor described them as having metal bottoms so that the needle isn't able to got through the bottom. We're not sure how the top is put together, but the doctor puts the needle into the port which then passes the fluid to the balloons through a tube. Only a small bit of blood comes from the injection site which clots after just a few minutes. It is pretty amazing.

Here are some pictures from 7/7/2013 showing the tightness around the skin after the first fill-up. It's pretty amazing to see how the skin grows and relaxes during the two week stretches in-between office visits.

Pictures from 7/7/2013:

Round Two

Everything healed up extremely well from the first surgery. Aside from a scarline that seemed to hide itself, especially once Zeke's hair grew back out, you could hardly even tell he had the first surgery.

While we didn't notice Zeke being bothered by the nevus at all, we did start to notice one of the other characteristics of the tissue - it is very thin and rips easily. There were many times while Zeke was learning to walk (or just crawling around) that he would bump his head just like any toddler would do. But, if he hit it just right on the nevus, there would be a little rip in the skin followed by some blood. It always seemed to only last for a minute or two and wouldn't re-rip or anything like that. So while sometimes bothersome, again it did not impact the way Zeke behaved.

Everything else was pretty normal for Zeke. He did go through a several month stretch of not being able to shake a cold/pneumonia/cough thing. He was on antibiotics several times and also started taking albuterol treatments to help out. Things seemed to have cleared up this summer, so we think it was just some bug that wouldn't go away. I don't think any of our doctors have thought it has been related to his nevus in any way, so that has been good to know.

4/6/2013

On 4/24/2013, we met with our plastic surgeon again to review Zeke's progress and talk about next steps. She was very happy with how everything had healed and felt it was time to move to the next stage. While she felt that she would be able to get some more tissue with another excision, she thought that now would be a good time to try a tissue expansion. She didn't feel that she would be able to get as much skin as she'd like through an excision and it would be better to try an expansion earlier than later. This made us a little nervous because of all the risks that come along with the procedure. However, after talking to the doctor a little more extensively about the procedure, we were reassured that the risks are actually quite low and that if anything did ever start to go wrong, we would be able to stop the process, remove the expanders, and regroup.

So, we decided to go forward with the expansion. She would attempt to insert two, one larger one on the top of his head and a smaller one behind his ear towards the back of his head. We scheduled the surgery for 6/18/2013. Before having the surgery, we also met with his dermatologist just to make sure nothing seemed to be changing with the tissue. Again, everything seemed to be looking fine.

Pictures from 6/17/2013:

This time around, surgery was going to be outpatient and also at the Children's Hospital in Minnetonka. Elisha was enrolled in a summer day camp at the YMCA so he went there for the day while Isabella went to daycare like normal. We did drop them off a little early to make sure we checked in at time, but expected to easily be home by normal pickup times.

Again, surgery went just as well, if not better than planned. Not only was our surgeon able to get both expanders placed just how she had hoped, but she was also able to do a little bit of excision off the front part of the nevus during the surgery. She was able to get a strip about 1x4 inches (this is a bit of a guess, we can't quite remember, but somewhere in that range!). We were able to hold Zeke while he woke up this time which was helpful because he was very upset as he woke up. This was likely due to being hungry, pain, and just not quite understanding what was going on. We were able to give him some painkillers, so that helped quite a bit. When he woke up later in the afternoon, he already seemed pretty much back to his normal self.

Pictures from 6/21/2013, you can see the slightly inflated balloons:

Then on 6/24/2013, we had a one week followup to make sure everything was looking okay.  As has become pretty normal with all of this, everything was looking great.  We scheduled our next followup for 7/3/2013 to remove the stitches and fill the bags for the first time.

A Brief History

Zechariah Jason Cairney was born on April 4th, 2012 at 9:22 PM at Glencoe Regional Health Services.

4/5/2012

Zeke was 100% healthy with no concerns at all except for a congenital nevus (first described to us as a giant hairy nevus) on the right side of his scalp.

4/10/2012

We had no idea what this growth was or what it meant for Zeke short or long term. A short Google search (which we were told not to do) showed quite a few alarming websites -  problems ranging from social scarring to chronic health problems. We should have listened. As we would find out later, each situation is very unique and there are often a lot of things that contribute to all of those other problems, not necessarily just the nevus.

Our first specialist stop was to a pediatric dermatologist on 4/17/2012. We learned quite a bit during our first visit. The main thing we learned is that we should know fairly quickly how serious Zeke's future health could be as a result of the tissue that grew the nevus.

There were two main things that tissue tests and an MRI would tell us over the next few weeks. First, is the nevus itself cancerous tissue or not? Second, was there any internal growth accompanying the external nevus? The chances of either of these items being an issue were pretty low. From how our conversation went, it sounded like nevi are usually nothing more than areas of skin that look different than others. For example, left untreated, Zeke's nevus would always have a different color, the hair would always be different than the rest of his scalp (texture/length/color), the skin would be more susceptible to ripping or tearing, and it would also be at a higher risk for skin cancer. The tissue did not have any coloration that immediately concerned the dermatologist and we left more informed and knowing we would be back soon to discuss further steps.

We next met with our plastic surgeon for the first time on 4/30/2012. Assuming all tests came back negative, our next course of action would be to start removing the nevus. After examining the positioning and area of his nevus, she determined that the best way to remove it would be by one or a combination of two different procedures.

First, is a staged excision. Through this process, the nevus would be removed in stages, cutting from the middle and pulling together the remaining skin to let heal. Doing this would allow for a hopefully large removal each time, depending on the amount and elasticity of his remaining skin. Second, is tissue expansion. This would be done by inserting a "balloon" under good skin on Zeke's scalp and inflating the "balloon" over a 3-6 month period. Once this was complete, part of the nevus could be removed and the extra good skin could then be folded over the area just removed. This would be more uncomfortable over a longer period of time and carried other risks such as popping and infection (although both also very low risks). Both these options would let Zeke's hairline stay pretty much intact and leave him with just a single straight-line scar that would likely be hidden once hair grew around it.

We felt very comforted to be in such great hands. If needed, we would not want to actually have a surgery until Zeke was 6 months old in order to let him be old enough for everything that would go into the procedure and also to let his skin be grown a little more to handle a surgery. We tentatively scheduled the surgery for election day, 11/6/2012. 

With the MRI coming up and the rest of Zeke's health somewhat up in the air, Zeke was baptized in a private ceremony on 5/1/2012, followed by an affirmation in front of friends and family on 5/27/2012. It was a great load off our shoulders to remind us that the LORD was looking over our one-month old son and that now through baptism he had been reborn as a child of God.

5/27/2012

Then on May 16, 2012, Zeke all of 6 weeks old, we went to Children's Hospital in Minneapolis for an MRI of Zeke's brain and spinal cord to make sure there was no abnormal growth underneath the skin. The MRI was actually no big deal, but Zeke had to be put under with general anesthesia, which at his age way pretty scary. Fortunately, everything went very well and he had no problems being put under. It was pretty nerve wracking for Mom and Dad, but Zeke was super. Mom stayed overnight with him for observation just to make sure everything went okay. We weren't expecting any results for about a week or so, but we did hear some initial reports that everything seemed normal, but that they wanted to do an ultrasound on his kidney area for something they picked up on the MRI that was likely unrelated to everything else. After the ultrasound, they believed they found a slight abnormality with his kidney, but after seeing a urologist a few weeks later, he didn't know what they were looking at - everything was fine. A confirmation came later that everything with the MRI did in fact look normal - no abnormal internal growth.

5/21/2012

5/23/2012

On 5/25/2012, once we had the MRI results, our dermatologist took some samples of the nevus tissue to determine if it was benign or not. Those results also came in fairly quickly, again everything looking very good - no cancerous tissue.

This gave us the few next months off to not worry too much about Zeke's health and focus on a growing little boy. Any fears we internally still had about him to suddenly get sick or to be in pain from the nevus quickly went away as we had a perfect baby acting just the same as his brother and sister did before him.

Finally, on 9/24/2012 we met with our plastic surgeon again to finalize the plan and date for surgery. She determined that for this first go-round we would be able to an excision. He had plenty of give in his baby skin  that she felt very confident that she would be able to cut out a large section. We also moved the surgery date up to 10/23/2012.

This picture really shows how different the hair is.

More below, but here are lots of pictures from 10/22/2012:

Grandma Nelsen came up to watch Isabella and take Elisha to school on the day of surgery. We went to Children's in Minneapolis again, bright and early for the surgery.

The results were much more than our plastic surgeon had expected. She was able to cut out about 35-40% of the total growth. We weren't able to see the results for about a day or so as we tried to keep everything covered for the first little bit. But we couldn't believe our eyes once we saw how great it looked. He was a bit groggy from the anesthesia, but once he woke all the way up, he was pretty much back to normal. The incision healed perfectly and the scar held up amazingly over the next several months.

That completes the first six (basically seven) months in Zeke's history. More to come with subsequent posts.

Pictures from 11/4/2012:

A picture of the hat Zeke had to wear for a while to make sure he left the healing alone. 10/27/2012